I was diagnosed around 10 years ago, approximately 8 years after my symptoms began. HS has levels of severity: 1, 2 and 3, with 3 being the most advanced. I was diagnosed when I was in stage 2 of the disease, and the key is catching it early. We were able to keep it from advancing further.
Because I was fairly rabid over reading everything I could about the condition, and because I was against taking antibiotics (even though they really did help me - but I was afraid I would become immune, and that would be terribly dangerous in the event I really needed help for something more life-threatening), I looked for everything out there to see what people were doing and thinking and trying.
Back then, people didn't really know what it was. Medical professionals changed their minds from year to year as they advanced their understanding of it. One of the biggest problems is that people are so hurt and scared and embarrassed by what is happening to their bodies, they won't share it with their doctors - or worse, their doctors don't recognize what they're looking at, which happened to me until I happened upon a dermatologist who was doing an annual body exam for moles. Her face suddenly fell, and she looked pained, apologetic. She asked me to sit down for a moment, and asked me if I have had problems with lesions and boils in my groin and as I shared with her the other areas, I could tell from her expression that she knew exactly what it was, and it wasn't good. She explained that it was nothing that was going to kill me, but it was incurable at this time as known to medicine; however, they do have ways to hold it at bay, etc. I walked out of there very excited, actually, with this strange latin-sounding thing written down on a piece of paper, because I had a diagnosis! Something to go home and look up on the internet! You and I both know the horror that befell me that day, as the photographs on the internet are terrifying.
They may be realistic, and this is the reality for many beautiful people who are tortured by this painful condition. Yet there can be hope. I personally learned about some things I could try to do for myself that simply took extra effort. I took turmeric capsules, as well as zinc capsules, and I used vitamin e oil (the quality that could be edible, not the pills that you pop, but the bottle that you squeeze oil out of) to condition the skin and heal some of the discoloration of the purple marks. Every day, I manually express the gradoo out of the tunnels that have formed if they are surface-level, and I know it's ready because the skin is elevated. I don't mess with it unless I can clearly see an exit pore, and if I can express it gently, working from the back and pushing it towards the front. If I should squeeze it hard like I'm squeezing a pimple, it will almost collapse it down into itself, pushing it deeper, and will most certainly generate a new HS lesion.
I've learned to recognize the signs of an HS lesion in its' early stages. At least for me, in my groin, I'll see a tiny black dot, almost like a blackhead. If I can get underneath it and express it, it's almost like a little white snake comes out with a black head. I think this is the stuff that turns into pus later because it smells absolutely *wretched*. I do that major expressing work once per week. And after that, I apply an anti-staph gel prescribed by my doctor, just because we are vulnerable to staph infections whenever our skin is open (or if we have an open lesion). I also learned that my HS flares up when I have my monthly cycle due to the hormones, so I take a birth control pill that causes a woman to cycle only 4 times per year, but I skip the placebos even during that time (under medical supervision, of course) and avoid cycling EVER to save me HS flare-ups. There is no problem for me with doing this other than occasional breakthrough spotting that lasts a day or two once or twice a year.
I apologize for being graphic with the steps I take to treat myself. I'm not sharing this to say "Hey! You should try this! It works like a charm!" Should you try some of my techniques, you could injure yourself, cause yourself greater harm, or cause lesions to grow deeper. I'm sharing what I have because I want you to see that there is some complexity to my life, and yes it sucks, but it's manageable. And the bigger point is, I have been able to reverse my HS from stage 2 to stage 1.
So, to answer your question... it is a very individual experience for every person... it may get better it may get worse; you will need to be proactive in your own treatment and be an advocate for yourself in speaking up to your doctor about what you need, and trying not to be embarrassed about what you're dealing with. One of the problems with this being such a "secret" disease is that the medical professionals at large haven't realized how large a percentage of the population this truly affects because of unreported/improperly diagnosed people.
By the way, I can't remember her name, nor can I remember the name of her new book, but there was a woman years ago who started up a website, and it was the one place where HS 'survivors' could go bond and talk among themselves about their shared condition. She is kind of like the torch-bearer for the HS community. I think her name could be Tara, but I could be wrong. The reason I'm bringing her up is because she just published a book (it may be the first publication about HS) about her accumulated knowledge and stories regarding HS. It may be worth a search.
Good luck to you - don't lose hope, because I am one example of how it CAN get better.
Search for questions
Still looking for answers? Try searching for what you seek or ask your own question.
Updated 12 Jul 2013 • 4 answers
Updated 10 Sep 2015 • 3 answers
Updated 28 Jun 2014 • 3 answers
Updated 17 Aug 2015 • 4 answers
Updated 8 Nov 2018 • 4 answers